News

Dawn Averitt is the Founder and Chair of the Board of Directors for The Well Project, a nonprofit organization formed in 2002 whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls. Dawn was diagnosed with HIV in 1988 at age 19 and has since become one of the nation's most prominent HIV/AIDS treatment advocates, holding federal appointments to the Office of AIDS Research Advisory Council and the Presidential Advisory Council on HIV/AIDS. As the founder of the Women's Research Initiative on HIV/AIDS (WRI), Dawn has been instrumental in shifting the research paradigm to include more women and people of color.

An Interview With an HIV+ Woman: Dawn Averitt

Dawn Averitt had very large swollen lymph nodes in her neck, and the doctors were testing her for everything trying to figure out what was causing them. They never suggested an HIV test (it was 1988), but she thought she might as well get her "HIV-negative card" while they were taking all of this blood from her anyway. Her medical team resisted testing her, but the more they resisted, the more she pushed. She really didn't believe she would be HIV-positive. She thought she was being cutting-edge, which appealed to her at age 19.

Doctors diagnosed you with HIV at a time when you were just getting into adulthood. Describe what that was like and what, if any, resources were available to you then.

I didn't know another HIV-positive woman in the world. My doctor told me not to read anything because there was a lot of bad information out there about HIV and AIDS. He told me not to tell anyone, either, because it could negatively impact my family. So I instantly discovered the shame and stigma that came with an HIV diagnosis. In addition, in 1988, there was only one drug to treat HIV. The drug was AZT. It was expensive and hard to take. In those days we took it every 4 hours, 24 hours a day, so I had to set my alarm for midnight, then 4 a.m., then 8 a.m., and so on.

Unfortunately, I did not know there was an AIDS community when I was diagnosed. Like so many women, I felt isolated and alone. I eventually found my way to a grassroots AIDS service organization, but that took almost 5 years! Strangely enough, I have now lived my entire adult life with HIV — in fact, I've lived more of my life with HIV than without — so it's hard to describe what life without HIV might have been like.

You mentioned that your doctor initially told you not to tell anyone you had HIV. What made you decide to tell your story?

I spent a number of years keeping my HIV status a secret to protect myself, but more importantly to protect my family. But that secret became heavy over time. I always worried that someone would find out and it would make life very hard for me or my family. In 1992, I went to my first program for people with HIV, at a local AIDS service organization in Atlanta called AIDS Survival Project. As I met others living with HIV, I realized how important it was for me to be able to share my story, to feel connected to my community, and to give back. I learned that normalizing HIV for women was, and is, the key to dismantling the shame and stigma. It helps to engage the American public in the fight against HIV and, ultimately, prevent this disease in our friends, families, and communities.

I decided to finally tell my story in a big way by coming out on the front page of the Living section of the Atlanta Journal-Constitution in February 1995. My family fully supported my decision to make a big public disclosure, which was an enormous gift to me. I was really scared. I knew that people would judge me, and I had to be okay with that. I could not have predicted or even imagined what would happen next.

In many ways, going public for me was the most liberating, empowering, and validating experience of my life. By choosing to be vulnerable and let people believe what they would about me, I gained strength. I took the secret away and, with that, I took the power away from those who would hurt me with it. I cannot pretend that there have not been hard moments, but overall this has been a very positive experience for me.

The stigma surrounding HIV/AIDS still hasn't entirely gone away, even after all these years. Why do you think that is?

I think stigma still exists because most people believe that HIV only happens to certain types of people. Because HIV is largely a sexually transmitted disease, there is a great deal of judgment about "how this could happen." Having said that, I think stigma has evolved some with this disease over time, and although external stigma absolutely exists, the stigma experienced by many of us living with this disease is, in part, self-imposed.

What do you think needs to happen to reduce stigma even more?

As I said, I am a firm believer in normalizing HIV, and I think this is particularly important for women. Until we incorporate HIV testing into routine preventative care — like regular Pap tests and so on — and take away the sense that this is someone else's problem, stigma is going to remain pervasive. Imagine if everyone in America decided that we should no longer accept 50,000 new HIV infections a year in this country. And that we all have a role to play in stopping new infections by knowing our own HIV status, practicing safer sex, helping those who are HIV-positive access and succeed in treatment and care, and dispelling myths about whose problem this really is anyway? Wow, what a difference we all could make!

In honor of National Women and Girls HIV/AIDS Awareness Day, what words of encouragement do you have for HIV-positive women who want to start families of their own but don't believe that it is possible?

HIV is part of our lives. But don't let it rob you of your life and your dreams. If your dream is to be a mother or have a family, there are so many ways to make that dream come true. I often say that at 19 years of age, the likelihood of dying wasn't the hardest part of my HIV diagnosis. It was being told that I would never have children. Somehow that was far more tangible for me.

The really great news is that we have come so far. In the United States, with good prenatal care and access to treatment for HIV, if warranted, the likelihood that an HIV-positive woman will have a baby who will ultimately be HIV-negative is better than 99 percent. Now, there are so many things to consider when deciding whether or not to have a baby and start a family, but there are great resources, including quite a few from The Well Project, to help make those decisions and to plan. Ultimately, I believe HIV should never eliminate possibility from our lives, for parenting or anything else.

You have been a strong advocate for HIV/AIDS research focused on women. How can other HIV-positive women get involved in research?

There are many ways for women to be involved in research. Participating in studies is really important and the obvious first answer. But there is also getting involved at your clinic or local clinical trials site as a peer advocate or educator. You could serve on a Community Advisory Board or study panels to share your opinions and experience. Women can even just ask questions about HIV in as many places as they possibly can so that those of us who are listening make sure your questions are addressed.

Which areas surrounding HIV/AIDS and women do you think need to be explored a bit more in the field of research?

I am particularly interested in the immune system in women. We are very resilient! I think we need to understand more about how we manage infection and disease. I also think there is a great deal to learn about the female brain and how we can maintain health over time in the face of hormonal changes, depression, and aging.

The blog A Girl Like Me is a program of The Well Project that allows HIV-positive women to share their experiences. What makes women willing to share their stories?

Every woman has her own reason or reasons for sharing her story. Self-empowerment, giving back, helping others, giving and getting support, lending her voice, building community — you name it. A Girl Like Me has really demonstrated how powerful our voices really are and how important it is for women to share with one another.

I am so proud of our bloggers and the women who have found their way to A Girl Like Me. I would have given anything to have had a community of women to turn to early in this fight. Now, almost 25 years into my own journey with HIV, I am so grateful to wake up every day and know that every step I take is bolstered by an amazing community of women — really sisters — who are walking this walk with me.